Parental Stress and Coping in Families of Children With and Without Developmental Delays

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1 Parental Stress and Coping in Families of Children With and Without Developmental Delays Volume 14, Number 2, 2008 Authors Vicki Lopez 1,2, Tessen Clifford 1,2 Patricia Minnes 1,2 and Hélène Ouellette-Kuntz 2,3 1 Department of Psychology, Queen's University 2 South Eastern Ontario Community University Research Alliance in Intellectual Disabilities 3 Department of Community Health and Epidemiology, Queen s University Abstract Parents of children with developmental delays experience increased levels of parental stress, often related to the severity of their child s behaviour. However, the experience of stress is dependent on how individuals perceive their situation and whether coping strategies (i.e., problem-focused, emotionfocused, and appraisal- or perception-focused coping) are used to manage stress. Forty-six parents of preschool children with and without developmental delays participated in telephone interviews as part of a longitudinal study on school transition. Parents completed measures about their child s behaviour, stress and use of coping strategies. Parents of children with developmental delays experienced greater levels of stress, and had children with higher maladaptive behaviour than children without delays. Despite differences in reported stress, parents of children with delays were using similar amounts and styles of coping as parents of children without delays. Future research should investigate the relationship between the various types of coping and their effect on reducing stress. Correspondence Vicki Lopez 5vl8@queensu.ca Keywords stress coping children developmental delay intellectual disability Having a child with an intellectual disability can impose financial, social and physical stress on the family (Mak & Ho, 2007). Research has shown that caregivers of children with disabilities experience greater stress than caregivers of children without disabilities (Hassall, Rose, & McDonald, 2005). Similarly, Baker et al. (2003) have shown that parents of young children with developmental delays report experiencing greater stress than parents of children without delays. Although a number of factors can contribute to the increased level of stress experienced by caregivers of children with delays, severity of the child s behaviour problems is often the strongest predictor of parental stress (Baker et al., 2003; Floyd & Gallagher, 1997; Hassall, Rose, & McDonald, 2005; Nachshen, Garcin, & Minnes, 2005). Moreover, it

2 100 Lopez et al. has been suggested that the experience of stress is related to how the individual perceives the stressful event and whether coping strategies can be used effectively to manage stress (Mak & Ho, 2007). The use of positive coping strategies has been shown to lower stress in parents of children with disabilities (Jones & Passey, 2004). In the absence of positive coping, parental stress is likely to have an effect on the child (Hadadian & Merbler, 1996). Daniels (1999) described three main types of coping strategies: problemfocused, emotion-focused, and appraisalor perception-focused coping. Problemfocused coping attempts to reduce stress by altering the problem or situation, emotionfocused coping attempts to reduce the emotional distress caused by the situation, and perception-focused coping attempts to change the individuals appraisals of the situation. The goals of the present study were to: 1) examine the level of stress reported by families of children with developmental delays compared to families of preschool children without delays; 2) investigate the relationship between child and family characteristics and stress; and 3) examine the relationship between different coping strategies (e.g., problem-, emotion-, or perception-focused coping) and reported stress. Method Participants Forty-six parents of children with developmental delays (n=29) and without developmental delays (n=17) participated in the study. The children ranged in age from 43 to 71 months. The children with developmental delays were significantly older (M=55.65; SD=7.24) than those without delays (M=49.47; SD=4.52), t(44)= 3.17, p<.01); however, all were entering school for the first time. The children with delays had a variety of diagnoses (i.e., autism spectrum disorders, Fragile X syndrome, Down syndrome, developmental delay). Procedure Caregivers of children with and without developmental delays participated in three one-hour telephone interviews as part of a longitudinal study of children with developmental delays transitioning into school. Although the parents were interviewed at three separate times throughout the course of the study, only data from the first time point, (i.e., the summer before school started), were used in the current analyses. Measures Parents provided demographic information pertaining to the child (i.e., date of birth, sex, diagnosis) and the family (i.e., household income, parental education) during the interview. The Scales of Independent Behavior- Revised (SIB-R) Early Development Form (EDF) (Bruininks, Woodcock, Weatherman, & Hill, 1996) was used to measure adaptive and maladaptive behaviour. The EDF provides a quick overall screen of developmental age of children from infancy to age 6. The SIB-R has excellent internal consistency reliability (r=.98), testretest reliability (r=.98), and inter-rater reliability (r=.95). It has also demonstrated moderate to good convergent validity with the Vineland Adaptive Behavior Scales (r= ). The SIB-R has been standardized on a normative population that included a sample of children with intellectual disabilities. The Family Stress and Coping Interview (FSCI) (Nachshen, Woodford, & Minnes, 2003) was used as a measure of parental stress. Parents were asked to report how stressful they found a number of JoDD: Brief Reports

3 Parental Stress and Coping 101 experiences related to raising a child. The FSCI has 24 items; however, two items were removed for the present study to adapt the interview for use with preschoolers. The individual items can be summed to create a Total Score. The results of research to date demonstrate high internal consistency ( = 0.89) and test-retest reliability (r = 0.8), and face validity when used with adults with intellectual disabilities (Nachshen et al.). The Ways of Coping Scale (WAYS) Revised (Folkman, Lazarus, Dunkel- Schetter, DeLongis, & Gruen, 1986; revised by McColl & Skinner, 1995) was used to ascertain the coping strategies used by parents when they faced a difficult situation related to their child. Parents were first asked to qualitatively describe a difficult situation, and then were asked to rate if they used each of 31 coping strategies on a scale of 0 (not at all) to 3 (used a great deal). Results To address the first aim of the study, the level of stress reported by families and the variables thought to contribute to stress (i.e., child maladaptive behaviour and parental income) were compared across the two groups (i.e., parents of preschoolers with and without delays). A multivariate analysis of variance (MANOVA) was conducted with total stress, maladaptive behaviour, and income as dependent variables and developmental delay status as the independent variable. The overall MANOVA was significant, Wilks λ=.50, F(3,42)=13.92, p<.001). Results showed that parents of children with delays reported significantly more stress (M=22.90; SD=8.47) than parents of children without delays (M=13.76; SD=7.62), F(1,44)=13.37, p<.001). This finding occurred despite comparing only stressors that did not make reference to the child s disability (e.g., feelings about the cause of the child s disability; explaining to others about the child s disability, etc.). Children with delays had higher maladaptive behaviour scores (M=-16.62; SD=10.15), than children without delays (M=-2.71; SD=4.09), F(1,44)=28.983, p<.001). The mean maladaptive behaviours scores for the children with delays fell within the marginally serious range while the mean for the children without delays fell within the normal range. In addition, parents of children with delays reported significantly lower income than parents of children without delays (F(1,44)= 12.83, p<.001). The average income bracket for families of children with delays was $35,000 - $45,000, whereas the average income bracket for families of children without delays was $65,000 - $75,000. To further investigate any relationship between child characteristics (i.e., maladaptive behaviour), parental income and stress, two multiple regressions were performed with stress as the dependent variable and maladaptive behaviour and income as predictors for each group of participants. Despite the differences in maladaptive behaviour and income between families of children with or without delays, neither variable emerged as a significant predictor of total stress for either group of families. Finally, it had been suggested previously that parents appraisals of stress and their use of coping strategies might ameliorate the effects of stress. In our study, there was no significant difference in total coping scores of parents of children with delays (M=49.00; SD=14.45), and parents of children without delays, (M=43.47; SD=9.90), t(44)=-1.394, p=.17. To investigate the types of coping strategies adopted by parents of children with and without delays, a repeated measures MANOVA was performed. The three types of coping (i.e., problem-focused, emotion-focused, and appraisal- or perception-focused coping) were added as a within subject effect, and v.14 n.2

4 102 Lopez et al. whether the child had a developmental delay was added as a between subjects effect. A statistically significant difference was found for the three types of coping, Wilks λ=.45, F(2,43)=26.47, p<.001). Post hoc analyses were formed using three paired sample t-tests with a Bonferroni correction for multiple tests. Results showed that parents of preschoolers were using both problem-focused (M=1.78; SD=.57) and perception-focused coping (M=1.66; SD=.57) significantly more than emotion-focused coping (M=1.09; SD=.49). There were no significant differences in use of any of the types of coping between families of preschoolers with and without developmental delay. Discussion Previous research has established that parents of children and adults with intellectual disabilities often experience considerable stress resulting from worries and demands related to their child (Floyd & Gallagher, 1997; Minnes, 1998). Moreover, Baker et al. (2003) found that parenting stress was higher for parents of preschoolers with delays than for parents of preschoolers without delays. The results of the present study supported previous findings indicating that parents of children with delays report experiencing significantly more stress than parents of children without delays. It has also been well established that children with or at risk for developmental delay demonstrate more maladaptive behaviours than typically developing children (Feldman, Hancock, Rielly, Minnes, & Cairns, 2000). Similarly, our study showed that parents of children with delays reported more child maladaptive behaviour than parents of children without delays. Although a number of studies have demonstrated that the severity of the child s problem behaviours is one of the greatest predictors of parental stress (Baker et al., 2003; Floyd & Gallagher, 1997; Hassall, Rose, & McDonald, 2005; Nachshen, Garcin, & Minnes, 2005), child maladaptive behaviour did not emerge as a significant predictor of parental stress in this study. Given that several previous studies have focused on children or adolescents with intellectual disabilities, further research is needed to determine whether severity of a child s problem behaviour is less stressful for parents of very young children with developmental delays. The effects of stress on overall well-being can vary, especially if coping techniques or strategies are adopted to help manage stress. In our study, we investigated the relationship between parental stress and coping to determine if parents of children with delays would report using more coping strategies because they reported higher stress. We were surprised to find that, despite reporting significantly higher stress, having lower income and having children with higher maladaptive behaviour scores, the parents of children with delays in our sample did not differ in the coping strategies they were using compared to families of children without delays. Although parents of children with delays and parents of children without delays did not differ in their use of coping strategies, both groups of families were using problem-focused and perceptionfocused coping, significantly more than emotion-focused coping. Future research needs to systematically investigate types of coping and their effect on reducing stress. The current study has a number of limitations. The small sample size may have contributed to the study s findings. In addition, only a small number of variables (i.e., financial concerns and problem behaviours) were included as possible predictors of stress. Future research using larger samples should JoDD: Brief Reports

5 Parental Stress and Coping 103 incorporate a broader range of potential stressors to determine which factors are most likely to contribute to the increased stress experienced by parents of children of delays. Our results demonstrate that parents of children with developmental delays were experiencing high levels of stress, especially regarding issues related to their child s delayed development and/ or specific diagnosis. Finding effective strategies to cope with the demands of raising a child with a developmental delay or disability is essential, as stress is heavily dependent on an individual s appraisals of the situation, and thus, perceived level of stress. Moreover, a number of potential stressors, such the day-to-day demands of raising a child with a delay or disability, or finding opportunities for the child to make friends or participate in social activities, are likely to become more problematic as the child gets older. As a result, future research should investigate the potential benefits of early intervention, parent education, and service and support use on parental adjustment and stress management. References Baker, B. L., McIntyre, L. L., Blacher, J., Crnic, K., Edelbrock, C., & Low, C. (2003). Pre-school children with and without developmental delay: Behaviour problems and parenting stress over time. Journal of Intellectual Disability Research, 47, Bruininks, R. H., Woodcock, R. W., Weatherman, R. E., & Hill, B. K. (1996). Scales of independent behavior Revised (SIB-R). Itasca, IL: Riverside Publishing. Daniels, K. (1999). Coping and the job demandscontrol-support model: An exploratory study. International Journal of Stress Management, 6, Feldman, M. A., Hancock, C. L., Rielly, N., Minnes, P., & Cairns, C. (2000). Behaviour problems in young children with or at risk for developmental delay. Journal of Child and Family Studies, 9, Floyd, F. J., & Gallagher, E. M. (1997). Parental stress, care demands, and use of support services for school-age children with disabilities and behavior problems. Family Relations, 46, Folkman, S., Lazarus, R. S., Dunkel-Schetter, C., DeLongis, A. & Gruen, R. J. (1986). Dynamics of a stressful encounter: Cognitive appraisal, coping, and encounter outcomes. Journal of Personality and Social Psychology, 50, Hadadian, A., & Merbler, J. (1996). Mother's stress: Implications for attachment relationships. Early Child Development and Care, 125, Hassall, R., Rose, J., & McDonald, J. (2005). Parenting stress in mothers of children with an intellectual disability: The effects of parental cognitions in relation to child characteristics and family support. Journal of Intellectual Disability Research, 49, Jones, J. & Passey, J. (2004). Family adaptation, coping and resources: Parents of children with developmental disabilities and behaviour problems. Journal on Developmental Disabilities, 11, Mak, W. S., & Ho, S. M. (2007). Caregiving perceptions of Chinese mothers of children with intellectual disability in Hong Kong. Journal of Applied Research in Intellectual Disabilities, 20, McColl, M. A., & Skinner, H. (1995). Assessing inter- and intrapersonal resources: Social support and coping among adults with a disability. Disability and Rehabilitation, 17, Minnes, P. M. (1998). Mental retardation: The impact upon the family. In J. A. Burack, R. M. Hodapp, & E. Zigler (Eds.), Handbook of mental retardation and development (pp ). New York: Cambridge University Press. v.14 n.2

6 104 Lopez et al. Nachshen, J. S., Garcin, N., & Minnes, P. (2005). Problem behaviour in children with intellectual disabilities: Parenting stress, empowerment and school services. Mental Health Aspects of Developmental Disabilities, 8, Nachshen, J., Woodford, L., & Minnes, P. (2003). The Family Stress and Coping Interview for families of individuals with developmental disabilities: A lifespan perspective on family adjustment. Journal of Intellectual Disability Research, 47, Acknowledgements The researchers would like to thank all of the families who participated in this study. This ongoing project is supported by the South Eastern Ontario Community-University Research Alliance in Intellectual Disabilities (SEO CURA in ID; Funding for the South Eastern Ontario Community-University Research Alliance in Intellectual Disabilities was provided by a grant from the Social Sciences and Humanities Research Council of Canada (SSHRC) [Grant # ]. The views expressed in this paper are not necessarily the views of all SEO CURA in ID partners, researchers, collaborators or of SSHRC. JoDD: Brief Reports